A clean bill of health

My surgeon called last night with the absolute best news ever. The final pathology was negative; both for the nodes and breast tissue. I am officially cancer free.

The emotion that overcame me at that moment was incredible. I could only say thank you over and over again to my doctor.

An amazing amazing feeling.

Moving forward

Bilateral mastectomy done. Tissue expander implanted. Now in full recovery and pain management mode. December 3rd was a long day to say the least. We checked in at 6am and I was wheeled into surgery around 10:45 and out around 5:30. The surgery was a success. The initial pathology during surgery on the nodes came back negative; there's still a slight chance the post-surgical pathology will come back positive but the doctors are optimistic.

Recovery is hard. The night after surgery was a haze of pain and nausea. The nurses gave me a rainbow of drugs to help with both but nothing seemed to work. Even my PCP drug button wasn't doing the trick. I attempted to eat...first ice cream (because why not, right?) then threw up about 10 minutes later then graham crackers which I kept down for a good 20. Then I decided to give up for the night and attempt sleep, which didn't really didn't really come easy.

Tuesday morning, my surgeon woke me up to check up on me. He took my bandages off and I got a glance at my new (let's be honest) butchered chest. He said he couldn't have asked for better - that my skin is in great condition and will do great for the reconstruction. Wonderful news. He wants me to walk around and asks the nurse to take the catheter out so I'm forced to get up to go to the bathroom. I don't feel ready for this at all, but I complied.

9am JM came for a visit with a bagel which was delicious - I hadn't eaten since Sunday night and I finally felt like I could keep food down for more than 20 minutes. The nurse suggested that I get up and attempt a walk down the 10' hallway. After my success with the bagel, I thought it would be a good idea. At this point I hadn't gotten out of bed since Monday morning before surgery. Moving my body never felt so painful - everything hurt and felt weak. I finally stood on my two feet and felt ok, took a few steps and in walks the plastic surgeon who thankfully advices the nurse that I look like I need to sit down...and out goes that delicious bagel I just devoured. Boo. I still need to use the bathroom so I waddle to the bathroom with JM's help and somehow make it back to the bed and out goes whatever else I have left in my stomach. It was only 11am and I felt completely defeated and done.

The day did get better. The doctor gave me new pain meds, a muscle relaxer and more anti-nausea meds. I got chicken noodle soup for dinner and successfully digested it, got up and went for a walk around the post-op ward and even watched a movie on my iPad. Success!!!

Wednesday morning, I was discharged with two drains and meds to keep me happy for weeks. By Thursday I was able to get my left drain removed and the right one the next day. Recovering at home is better but far more frustrating than being at the hospital. I see JM doing everything for the girls and me not being able to do a thing. I feel completely useless...well, I am useless and in fact a burden because I have to ask for help with everything.

JM is an angel. He makes me laugh and forget my pain and has been my advocate throughout this whole ordeal. When he holds my hands, he makes me feel at home. When he kisses me, he makes me feel more loved than anybody in the world. His laughter is contagious and infects my whole being, and watching him be a good father makes me the happiest of all.

The girls have also been amazing. They help me get up from my chair, cover me with blankets, put my slippers on write me cards filled with love, and give me kisses and leg hugs since they know my chest is off limits. On Tuesday they came for a visit at the hospital and Anabelle held my water bottle, opened and fed me my saltine crackers so my med wouldn't make me sick. Both girls stood on either side of my bed holding my hands; both with smiles as wide as their little faces; never showing any worry in their faces. As a mother this is something I never wanted my kids to experience but I am so extremely proud of their maturity and compassion. JM told me later that in the hallway of the hospital Anabelle broke into tears from what she saw. I can't express how amazed I am at her strength to stay so strong in front of me...even making jokes to make me laugh.

This year has been the biggest challenge for all of us but I cannot wait for 2013. We all deserve an amazing 2013 and I know in my heart that it will be.

Thoughts of a husband and father

"The doctor called, he said it’s malignant." Shock. Fear. Confusion.
Sadness. DO NOT CRY. Denial. "It's ok. We're going to be ok."
No way. No way this is happening to my family. She is quietly
sobbing. Be strong for her. I can't stop myself; tears stream from
my eyes and panic fills my gut. Get a grip man. Pull over. Don’t
alarm the girls Get your head straight. Hold her. Soothe her.
Everything will be all right.

I will never forget the moment that Kana told me she has cancer;
unequivocally this was the scariest part of the whole ordeal because
of the unknown. Cancer is such a big word. A few years ago, my
family had just finished dealing with a breast cancer scare. My dad
had been diagnosed, had a lumpectomy and a couple weeks of radiation.
Lucky for us, he caught it extremely early. I remember being so
much more level headed; calming my mom and helping navigate the
medical decisions with my dad. After I told him about Kana, he
reminded me that life deals us cards and we make the most of what we
are given. Don’t give up just because you don't like what you have.
Play out the hand and try to come out on top. In between my dad’s
episode and Kana's diagnosis a friend of ours was diagnosed with
stomach cancer; stage IV. I remember calling her husband after I got
a text from him telling me the staging. The doctors had talked to
them about longevity. Kana and I were heartbroken. They have 2
beautiful kids together and I couldn't help but imagine what it would
be like if we were in their shoes. We had visited them in
Albuquerque because it was important to us to make sure that when we got together
we were all together when our kids met. After she passed her
husband sent me a text thanking me for being there for them. At the
time I didn't thank him for sharing his friendship with me. I
remember seeing him care for his wife and kids and admiring him for
being such a good father and husband. I remember feeling embarrassed
about the things I complain about. She passed a few months after our
visit and 1 year later we found out that Kana had cancer. Almost
immediately I thought of them. Their experience made what we are
facing scarier than it really is but at the same time easier. Easier
because we saw first hand that when thrown into the roughest waters
that life can churn out, all is not over. They showed us that love
for one another can get you through the darkest days by helping you
find appreciation in life and celebrate even its most simple things.

Seven months into treatment and cancer has become a normal part of our
life. Kana has lost her hair. Fatigue is an issue. Chemo has pushed
Kana into early menopause and her temperament has changed. She is
certainly still more level headed than me when I'm hungry or tired.
And you guys have seen her, still beautiful. Kana is like an orchid;
vibrant and full of life yet also delicate. I suppose life is like
that too. Nowadays, for me, living a fulfilling life is about the
appreciation of the most simple and minute details of my family life;
seeing Kana wake up from a nap during an infusion and smiling at me or
holding hands while watching the kids play in the backyard. I don’t
want to miss a single moment of it. Life can turn you onto your head
in a flash second so I don’t want take things for granted. Kana asked
me to describe the last few months in three words. "Aged ten years"
and we both had a laugh. I have thought about the next ten years a
lot lately, and how I want to enjoy as many moments, from the simple
and small to the monumental and epic with Kana, Anabelle and Sofia.

Our lives have changed forever. Temporarily challenged but as I've
seen Kana fight with such elegance and grace I know that our lives
have been enriched. When you try to leave for an infusion and you
hear your two year old crying "No want mama go chemo!" and hearing
from my sister that my 4 year old cried while watching the scene in
"Totoro" where the girls are trying to visit their mom in the hospital
but can't it breaks your heart. My girls have seen their mom fight
cancer and I hope that they see that there is no challenge in life
that can put them down. Get up and fight on. Mom did it and so can
you.

I'm finishing this entry three months after I started it. Kana
finished her last chemo infusion on October 30th. Her hair has started to grow
back and her beauty and vibrancy is starting to peek through the chemo
cloud that has been cast over her for the last six months. We still
have two more phases to go but supposedly surgery and radiation is a
cakewalk in comparison to the slow trudge through chemo. I want
everyone to think of the thing that they are most proud of in their
life. We all share that feeling of pride and accomplishment about
something and I know from deep within my soul, spirit, chakras,
whatever, that in my life I am most proud of Kana and I am truly
thankful that she is the mother of my children and the love of my
life. I look forward to celebrating life with my family and for the
opportunity that over the next 50 years, Kana will be by my side when
we watch our girls get married and play with our grand kids.

Now, on the eve of Kana's mastectomy I want to give my deepest thanks
and appreciation to our family and friends who have made this past 7
months easier and supported us. We are looking forward to finishing
up and celebrating with and thanking all of you in 2013!

Out of the dark

I just got home from my MRI at the Stanford Imaging Center in Redwood City; the 7pm appointment was the only available time so I had to take it. I went by myself because JM had to stay at home and watch the girls. I was only one of four cars parked in the dimly lit parking lot. I parked and walked up to the building and was greeted by a guest services staff who pointed me in the right direction. 

The lobby was filled with the sounds from the self-playing piano and low-lights that left the lobby feeling eerie. The one advantage to geting the imaging done so late in the day is that there's no wait. I checked in and before I had a chance to open my book and read, I was ushered into the dressing room. I undressed and put on my two hospital gowns as instructed and looked in the mirror and giggled. I looked silly; my riding boots, leggings and my oversized flower-printed hospital gown with my purple scarf...not that I was going to a party, but could they make these hospital gowns any less attractive? 

I got an IV (for contrast injection) and followed the Tech to the room. Laid down face down with my breasts hanging down in the MRI contraption, got some ear plugs and headphones and waited. I was given some instructions about the injection then the machine slid me in. As I laid there, I closed my eyes and my mind started spinning. The last couple of days of imaging brought me back to the very beginning of this whole ordeal.  The anticipation and nervousness all came rushing back and my body felt unbalanced and unstable. What if they find something. What if the chemo did not accomplish all that we thought it had.  I tried to ignore it, but it kept getting worse. I opened my eyes and the spinning stopped. I tried to remember the positive results of the mammogram and ultrasound from the day prior to calm my nerves, but every time I closed my eyes my mind wandered to places I did not want to be and thoughts I didn't want to think. 

All the unknowns and what-ifs that have been creeping into my mind for the last six months exploded over me like an avalanche as I laid on the table in the dark in what felt like a coffin. The edges of the machine were pressing up against my arms and making me feel claustrophobic. The loud foreign noises were making me feel anxious and uneasy. My body got more and more tense as the scan went on and on.  My body involuntarily jumped at each noise and vibration during what felt like hours. When I felt like I couldn't take it anymore, the tech finally came back in and I was done. I was rolled back out of the machine, got off the table and remembered that I am not the same person I was 6 months ago. I have been through what felt like hell sometimes and am now back recovering and trying to slowly regain composure of myself.

All done. Oshimai. Sayonara.

Tuesday, October 30, 2012 was my last chemo infusion. My Oncologist said we looked giddy, which was probably an understatement. I was so beyond excited to get to this day and be done. Nights before this day, I started thinking about what it means to be a survivor of cancer. Thinking about what if it comes back or what if I develop a new cancer somewhere else.

For the last 6 months I have been sunk deep in trenches of fighting this cancer; not thinking about much else but getting through chemo, then surgery, then radiation, etc. I'm slightly afraid to face 'regular' life after all this is done and I am back to 'normal'. I feel a little like I'm standing alone on a big stage with hundreds of people expecting something from me. But I have nothing to offer - no words of wisdom or direction on my own life.

What do I do once I'm all done with this fight? Where do I go? I'm starting to ask myself these questions a lot now and get no clear answer.

I still have multiple surgeries and radiation ahead but I feel like I can let out a big sigh of relief with the end of my 6-month marriage to chemo. Last round of chemo's side effects are all the same: nausea, nausea, fatigue and digestive issues. I've been sleeping for the last two day and nights to ignore my symptoms as much as I can, but I should probably wake up and eat a little something and drink a little more water.

Thank you all for your texts messages, cards, emails and flowers celebrating my last day of chemo. I feel like a lucky girl to have so many behind me along this journey.

One more to go

Last Tuesday was my second to last chemo session! Hooray!!!! Side effects this time around: more nausea, sinus headache/pressure and fatigue...all expected, but not fun. :) That's me sitting in my lounge chair happy that I'm almost done! One more left on October 30th and I will be 100% done with chemo. I have a month off to recover from the chemo and will enjoy some Thanksgiving food and family, then on December 3rd I have my bi-lateral mastectomy. I decided to get the tissue expanders put in at the time of the mastectomy which I will have to get filled every few week to expand my skin and muscle to accomodate the new permanent implant that will be placed in about 6-8 months.

After surgery and the Holidays, I start my 5 week course of radiation: Monday-Friday, 25 days. The end of the treatment plan is so close, I can finally see it and almost feel it.

----

Toward the end of my last infusion, a woman with two friends walked in and sat in the chair across from mine. From what I could overhear it sounded like she was on the very same chemo regimen (the Buzdar regimen) and it was her very first day. She had all her hair still and looked nervous, uncomfortable and a little out of place (I think it was the hair). I would hear bits and pieces of her conversation and could hear the tension in her voice. I was so tempted to walk over to her and say, "You can do it! If you ever want to talk just call me..." But I didn't. I didn't want to be intrusive or nosy, but in all honesty if someone had come up to me on my first day and reached out to me, I would have been so grateful. I regret not approaching her. Hopefully I'll see her again in the Infusion Center and I'll have enough courage to talk to her and share my experience with her then.

Seeing her brought me back to where we were six months ago: scared, unsure and nervous about the road ahead. I've had my share of emotional and mental breakdowns since May and have had many nights and days of self-reflection and self-realization, and what I came to realize is that cancer has made me selfish. I have been completely in my own head for the past six months with tunnel vision of seeing mostly ME and not everyone else around me. I know that having cancer is awful, but being a spouse, child, sister, brother, mother, father, in-law, friend of someone who has cancer sucks too. I feel like my acknowledgement of that fact has been sparse.

I thank the people in my life everyday - for all the help with the kids, the house, and me, but realized that I'm so stuck in my own head that I don't say it out loud enough. I don't say thank you to the people who matter...out loud, so they hear me loud and clear. I will change that starting now.

Perspective

About a month ago I entered my name for 49er game tickets at Stanford's Women's Cancer Center. A few weeks later, I got a call saying I won two tickets. I've never won anything so I was pretty excited to get the call. I took JM, of course and we went this past Sunday. His birthday was on Friday so it was the perfect belated birthday present.

It's October, Breast Cancer Awareness Month so the 49ers had dedicated a small section of the stadium to breast cancer survivors and their guests to enjoy the game and participate in the half-time show. I met a number of women either going through cancer treatment like me or women in remission from the disease for upwards of 25 years, giving me hope for my future.

For the half-time show, we were ushered onto the field by the cheerleaders and gifted a pink pashmina by a 49er alum (I wish I knew football well enough to know who gave me my scarf). The applause and cheers enveloped us from every angle of the stadium; empowering me with strength to keep fighting and moving forward. I felt loved, encouraged and supported by complete strangers I will never meet or exchange words with, and felt camaraderie with the women standing next to me who are fighting the same disease I am fighting. I admired my fellow cancer buddies and was in awe of their happy, vibrant smiles and hoped that I was exuding the same positive energy for them.

I came away from the event feeling so blessed and lucky to be where I am. I caught the cancer early and the chemo and hormone therapies crushed the cancer immediately. There were a number of women at the event who were on their second or third chemotherapy regimens because their previous regimens hadn't worked or their tumor kept getting larger. Before the half-time ceremony there was about 30 minutes when we had a chance to chat with each other and exchange stories. One woman said that she would be happy if she can live 5 more years, but instead of just leaving the world without making an impact, she's doing everything she can to further breast cancer and BRCA research so that one less woman (or man) has to go through this. Her attitude and courage is inspiring.

I know I will survive this and live. My prognosis is great, maybe even excellent (I'd like to think that it is, at least). ;) When I hear stories of women who's prognosis is not as good as my own, I feel an immense amount of guilt that I will be OK, and that living another 5 years is not a question but a certainty. I wish nothing but the absolute best for these women and all the other women fighting this disease. We have come so far in breast cancer research but the road ahead is still a very long one. Thankfully for me and the thousands of other women with HER2+ breast cancer, a drug called Herceptin was introduced as a targeted hormone therapy.  Fourteen years ago, HER2+ breast cancer was very hard to beat, but with Herceptin my tumor shrank after the first treatment. I am done with chemo on October 30th, but will continue with Herceptin until May 2013.

My little preachy bit before I go...and since it's breast cancer awareness month it's sort of fitting...early detection is key to beating this awful disease. Ladies and gents, do a self breast exam, check your family history and if you have a history of breast or ovarian cancer ask your doctor about whether you should have a BRCA gene mutation test done, get your mammograms ON-TIME, get an annual PAP, get your annual physical...here's to all our health and happiness.

PS Thank you all so much for your emails following my last post. I have the most amazing friends and family who lift me up and make life a lot brighter and happier when I'm feeling down. Lots of love to you all.

Stuck

I figured it out. Weeks of depression, frustration and anger and the conclusion I came to is this. I feel like everyone and everything is moving ahead and I'm stuck dealing with cancer. I feel like all my plans have been put on hold and that I'm stuck standing in the same place for the next year.

I'm a planner and had my life mapped out for the next couple of years and this messed all that up. Maybe this is life's way of telling me to be more spontaneous; plan less and enjoy the present. Be less structured and be more free-spirited.

The frustration and depression is made worse by me looking the way I do and having a bad self image of myself. I tell Anabelle that it doesn't matter what a person looks like on the outside, but I wake up everyday and look in the mirror and shy away from spending too much time looking at myself because I am scared I will get freaked out at my own reflection. Why? I am so weak that I can't get over this temporary alteration? It's disappointing to think that I am so vain that I'm having a hard time with this. I need to get over my insecurities, but it's so hard. I feel so superficial and stupid writing about this, and I honestly considered not posting this because I should be thankful that this is all I have to go through to beat cancer. Ultimately this blog is about how I'm dealing with cancer and treatment, so in an attempt to be as honest as possible I will risk being judged or criticized.

Maybe it's not that I'm vain, but that I'm in denial that I have cancer. As much as I think I embraced and accepted the diagnosis, in a quiet moment when I'm by myself I still have not and cannot come to terms with the fact that I have breast cancer. Maybe that's why I haven't joined a support group...because once I do, I'm surrounded by people who have the same disease I do and have to admit to myself that I'm also part of the cancer club.

Obviously I need to come to terms with my life - my diagnosis and the slower pace. Although my life is filled with unwanted doctor's appointments and drugs that make me feel sick, life has given me this time to slow down and smell the roses...so that, I will try to do.

House Arrest

It's been a week and a two days since my last chemo infusion. I was under house-arrest until this morning to make sure I give my body a chance to recover; my counts need a chance to come back up without being exposed to germs. My body is the weakest on days 5-7 after chemo, but we're being extra safe because of what happened last time. House-arrest sucked...it was boring and tiring. I was so bored two days ago that I even ironed our sheets and duvet cover (embarrassing that I just admitted that to the public).

My chemo regime was changed due to my hospitalization:

• A 20% reduction of Epirubicen;
• elimination of the extra 5FU infusion on Fridays; and 
• instead of the Neulasta shot on the Saturday after infusion, I have Neupogen shots for five days starting the day after my chemo infusion 

The week following chemo was miserable. I felt like a truck ran me over and I drank a bottle of tequila all by myself every night. The nausea was almost unbearable. I could barely talk, let alone move. Every move I made - whether it was getting out of bed or getting off the couch I felt like I was on the verge of throwing up my entire stomach. I lost almost 10 pounds by Sunday because all I ate was a bowl of porridge and water a day. I am deathly afraid of the third cycle because chemo has a cumulative effect, but only two more left so I can't complain, right?  

After my hospitalization, I decided to go back on medical leave until I can get through the remainder of my chemo treatments. I feel a little bit like a failure that I couldn't work through this, but this is not a time to try to be a super-hero, over-achiever, right? I just need to get over it and realize my body's limitations. Argh. 

❤Home sweet home ❤

Finally going home. Missed our anniversary but will be home for Sofia's birthday!!!!!

No conclusive reason for the fever, but we'll be changing my chemo regimen for the next round: lessening the Epirubicen dose, possibly eliminating the 5FU infusion on Friday and eliminating Neulasta.

Some possibilities for the fever are:

1. Japanese and Chinese women have a particular enzyme that makes it difficult for the body to process the Epirubicen
2. In very rare cases, the Nuelasta shot cases fevers in the following week after injection

Either way with the adjustments for the next regimen hopefully I won't end up in the hospital again.

Thank you all for your supportive emails, calls, text messages. Your love and encouragement has helped me get through this last week.

still here...

It's Monday, September 10th. Our 7 year wedding anniversary and where am I? At Stanford Hospital...BUMMER.

I've cried a lot already today and it's only 9:45am. I'm sad that I'm not home to kiss my kids good morning for the 5th day in the row. I'm sad that I couldn't kiss my husband good morning on our anniversary. I'm am sad that I had to ask my sister to make Sofia's birthday cake because I'm afraid I won't be home to do it. I know I need to stay positive, but for as long as I've been here and for what I know is coming as far as testing today (spinal sample) I doubt I'll be able to leave on Wednesday, September 12th to celebrate my baby girl's 2nd birthday.

Damn this cancer crap. I just want to be home with my kids and JM...I don't feel like I'm asking for much.

Hospital, hospital. When can I go home, Doc?

I've been at Stanford hospital since Wednesday (9/5). I came here because of a fever. Once admitted, we found out that I am neutropenic; my neutraphil count was 200 (borderline is 1500), so I basically had nothing left in me to fight any germs/infections. The hospital put me in isolation until my counts came up to above 1000.

While in the ER, the ER nurses asked me if she can access my mediport and I say yes.  I ask her if she knows how to do it and she confidently says 'yes'. The next 5 minutes were hell. She goes into access and stabs me in the wrong location, then tries again and is shoving the needle down where it obviously wasn't supposed to go. Then she asks if she can try again and I stupidly said yes. She gets another kit ready and stabs me again; third times the charm? Nope third time was the worst. It was like she was taking a knife and stabbing me in the chest over and over again; my legs were kicking out from the pain. What I really wanted to do is bitch-slap the nurse who said she knew what she was doing and obviously did not. Lesson learned: do not have an ER nurse access the port. As a cancer patient, try to go the ITA (if it's open and not the ER); in my case ER was my only option.

There was no isolation rooms on the Onc/Hemo floor so I was kept in the ER for the first 24 hours+. When they were finally able to move me down to Onc/Hemo, my counts had come up to 800 which they felt was high enough for me to share a room with another cancer patient, Phyllis. She was a lovely older woman who had just relapsed from leukemia and was here getting her chemo treatments and leaving the next day.

My criteria for leaving are the following: no fever for 24 hours and neutraphil counts have to be 'normal'. I got the second one taken care of - my white blood cell counts are actually through the roof (probably due in large part to the Neulasta shot I got last Saturday that stimulates the bone marrow to made more while blood cells). The problem is this, even though my count is up the new white blood cells are immature like "2 year olds" per my Oncologist and they dont quiet know what they're doing. These cells need to mature and start working the way they're meant to work.

In general, I feel good. My appetite is back for the most part. But I am beyond frustrated as to why they can't figure out why I keep spiking 100-102+ fevers. They've run every test imagineable and nothing is coming back positive, but I still spike a fever at least twice a day. The last time I had a fever today was 1PM, so I'm praying and praying that I don't a fever between now and 1PM tomorrow and I should get the green light to go home. Usually my second fever strikes between 8pm and 10pm, but so far so good.

Every time the nurse comes in for vitals check and says any number over 37.8 I start to cry. This has been such an emotional roller coaster. I haven't seen my kids since Wednesdays (they think I'm at a spa getting massages and eating fancy meals) and both of our families have rallied to support us with the kids, meals, and everything else. I cannot be more thankful for all the support. I love you all.

So...wish me luck. No fever for the next 12 hours and I can go home and see my kids when they come home from a weekend away with their cousins and aunt and uncle in Pacific Grove. :)

Vanity...Hang Over...

I know I should be grateful and thankful and I am, don't get me wrong, but I am starting to feel like a hermit. I don't really ever want to go anywhere aside from the necessary runs to the grocery store. I know it shouldn't matter what I look like, but it does. The hair on my head is almost gone but not quite...I sort of look like a newborn baby bird...with fuzzies on my head.  My eyebrows and eyelashes are thinning and my skin looks sallow and blotchy. All of these things - I am thankful that I even have the energy to worry about, but all things I wish I didn't have to worry about.

Anabelle's Back to School night was on Monday. I met her teachers and fellow parents and I just didn't feel like myself. I felt uncomfortable in my own skin and didn't want to talk to anyone. Frankly I didn't even want to go, but what kind of parent would I be if I didn't go to my daughter's BSN? It's not like I would have had a good excuse...my excuse would have been, I don't feel pretty. Not good enough...so I went. I put on a little makeup, (something I haven't done in months) a pretty scarf, (my wig is so hot that I couldn't get myself to wear it) my big girls pants and a smile and went. 

I know that no one there was judging me or making me feel uncomfortable except for myself, but still when you see women dressed nicely with their hair done and face looking bright and healthy it's hard not to feel jealous. I know it's been effecting Anabelle lately as well. She told me the other day, "Mom, you look pretty now, but I like you better with longer hair. It's going to start growing back around Christmas, right?"

I wish that I was strong enough to not feel vain while going through cancer treatment, but I'm not. I wish I didn't care about how I look right now, but I do. If I become a hermit for the next 3 months, then you all know why.

-------------

Tuesday was my first day of the new treatment: FEC. I got all three drugs and a cocktail of anti-nausea meds. And a major highlight of the day, (or two) I got a window seat and they got brand new, comfy, electric lounge chairs in the Infusion Center - seriously you may think this is a joke, but after sitting in the same chair for 4+ hours it's good to be able to recline all the way and have your feet stretched out all the way, and not have a sore butt at the end of it all. 

So the new drugs are harder, but not as bad as I thought they were going to be. I've been feeling queasy and nauseous since Tuesday, but nothing that I can't work through. I have lots of anti-nausea meds that I'm taking so that seems to help me a lot...and drinking lots of water. It's like I'm sea-sick or hung over all the time now...a shitty feeling for sure, but nothing that I should be complaining about. I feel like I have it easy compared to so many others, so I am grateful that I seem to be taking the new drugs decently. 

I had my second dose on Friday (only the 5FU) and a immunity booster shot of Neulasta on Saturday morning.  Week one out of the 4 infusion weeks is out of the way.  I get two weeks off and then I am back on.  November 2nd is my last day of chemo.  I'm excited for this to be done soon.

Halfway there

I'm having a mini celebration for myself today. Week 12 of chemo, my halfway point is done: August 21, 2012. 50% done, in the bag, and behind me. Wooo-weee!!

Taxol, no offense but I hope to never ever have to see you again. Ever. Thank you for doing your job, but I don't want to ever see my or anyone I know's name next to your's.

Taking its toll

Alright, chemo you win. After 11 weeks of Taxol my body is finally exhibiting some major side effects. I know I should be thankful that it took this long (and I only have one treatment left of Taxol, then onto FEC) but man...this sucks. I feel like an 80-year old grandma with arthritis. My knees and my lower back hurt so much that I feel like I can't walk upright and definitely cannot pick up Sofia. I just got off the phone with the doctor and she said to swim and take lots of Advil to ease the inflammation; got it, Doc!! Except that I feel like shit and I don't want to do anything but lay down and my body hurts too much to lay down. Power through, power through...I keep telling myself this as my body aches and begs me to stop pumping it full of drugs.

My sweet darling kids

I had my 9th treatment today and learned that because I skipped my 4th treatment I have to make it up on the back-end. No big deal though and still doesn't change my November 2nd date.

Yesterday Anabelle and I were hanging out in our bed and she snuggled up close to me and said, "I'm sorry you have to have chemo, mom. But your hair will start growing back for Christmas, right?"

Even Sofia this afternoon saw my bandage over my port and pulled down my shirt and asked, "Mommy, ouchy? Me ouchy too," pointing to her chest and then gave me a hug.

It breaks my heart that the girls even have to think and process this illness but also completely warms and makes me feel so incredibly loved.

2 more to go...then 4 more...

Yesterday was my 8th treatment (9th week). I have 2 more treatments to go on this cycle, then it's onto FEC...which is just 4 treatments over the course of 3 months. I saw my Oncologist yesterday who told me she doesn't need to see me until I start the FEC cycle because I'm doing so well; yay me! My lymph-nodes are so small that on a 'healthy' person it wouldn't be anything suspicious and my tumor is almost impalpable. My response to the chemo says a lot for my long-term prognosis, which is great news.

I've marked November 2, 2012 as my LAST DAY OF CHEMO, and am counting down the weeks. We are meeting with the Radiation Oncologist next Monday about my radiation plan after chemo and then we'll meet with the Plastic Surgeon and the Breast Oncologist Surgeon again to map out my surgical plan. I feel like I'm finally starting to see the light at the end of the tunnel even though I still have a long road ahead.

Chemo side effects

Before I started chemo, I was afraid of the side effects you hear about all the time: nausea, vomiting and the hair loss. No one told me about chemo effecting my temper, patience and general inability to deal with stressful situations. I am doing the best I can, but just feel like a wreck sometimes. Hopefully I'll be back to 'normal' by next year when I'm done with the chemo treatments.

Where's the tumor?

Treatment 7 is complete and I feel great.

The Oncologist can barely feel the tumor anymore and the lymph nodes are so flat she can barely feel that either. Woo-hoo!!! Go chemo, go!

I have 5 more treatments of this cycle, then it's onto the second cycle of FEC; twice a week then a 3 week break. It's supposed to be a harder cycle to deal with because of the "E" in FEC which stands for Epirubicin, but I've taught chemo who's boss and I intend to keep doing the same with the second cycle! :)

Birthday, birthday...

July 1st was my 33rd birthday. We had our families over for a barbecue, had three cakes (we also celebrated my niece's 6th birthday) and all ate way too much food. Life can change so quickly in one year. I have so much more clarity on what is important in my life than I did a year ago. When you're faced with your own mortality you quickly realize your priorities.

I feel like I have two birthdays now. My real birthday and a second birthday: May 3rd when I was diagnosed with cancer. Every year on May 3rd I will remind myself how fragile and important life is, and be thankful that I was given a chance to survive cancer and live my life to the absolute fullest potential. 


I've said this before, but I'll say it again. I am blessed to have an amazing support network behind me. Life is defined by the people you surround yourself with and I feel like the luckiest girl to have the family and friends I have. 


Happy Birthday to me and CHEERS to all the people in my life who I love very much...here's to the year ahead full of challenges, accomplishments and the fun we'll have together.

Kids and cancer

Having kids before you have cancer is a true blessing. When you have chemo, it damages your reproductive organs and possibly your ability to have kids in the future so the fact that we knew with 100% certainty that we were done after Sofia is a true blessing.

Being a mom and having cancer DOES come with his challenges though. Like, what do you say to your kids? My kids are 4 and 21 months; how do you communicate such a big life event to such young kids?

We told our girls while having dinner one night when we were still in Seattle. The conversation was brief and went something like this:

Me: So girls, your dad and I want to talk to you about why mom has been going to the hospital so much lately.
Anabelle: ok.
JM: Girls, your mom is sick but is going to be fine. She has something called cancer but they have good medicine that is going to make her feel better so you guys don't have to worry.
Me: Yup! Mom is going to be just fine. It's just going to take some time and I might be tired but soon enough I'll be all better.
Anabelle: ok. So can we talk about how my day was now?

We decided to drop the conversation and not harp on it or talk more about it since Anabelle had very clearly communicated to us that she had had enough. But the other night when I was laying down after my treatment Anabelle asked me, "Mom, why do u have to get medicine all the time?" I responded by reminding her that I have cancer and the only way to get better is by getting lots of medicine.

It makes me wonder if I'm doing this whole 'mom with cancer' gig the way it's supposed to be done. We have an appointment with a family therapist at Stanford who specialized in helping cancer patients but that's not until August. As with every parenting issue, I know there's no one way or perfect way but I hope, hope, hope that I'm not messing up my kids by saying too much or too little.

On Friday, we met with the Associate Director of the Stanford Clinical Cancer Genetics Program about my BRCA2 gene mutation. We got more information on what it means to have this mutation. The highlights: double mastectomy is an option, not a MUST; ovaries need to be removed at age 40 to prevent ovarian cancer; there is a 50/50 chance I passed this mutation to the girls; and if they had to guess, I most likely got this gene from my dad's side. My dad's family is a predominantly male family and their guess is that the gene mutation has been hidden through the generations. For an adult male, carrying the BRCA 2 gene mutation only slightly increases risks of certain cancers, so it's not necessary for my brother to get tested until he wants to have kids. Both my parents and my sister are being tested so we have a full picture of who has this mutation in a few weeks.

One amazing thing we learned today is that if we wanted to have another baby we can ensure with 100% certainty that the new baby will not have this gene mutation. It's called pre-implantation genetic diagnosis. They would take my eggs and screen them for the gene mutation, toss the eggs with the mutation and implant only the healthy eggs with the healthy sperm. Pretty amazing, huh? The good thing about this gene mutation is that it cannot skip a generation; meaning if I didn't pass it onto my girls, that's the end of the line! I only wish I had known about it before we had kids, but that's a moot point now.

My girls have 20 years before they have to worry about whether they inherited the mutation. I pray they didn't inherit it, but if they did my hope is research and development on breast and ovarian cancers and BRCA gene mutation carriers will have advanced so much that it will be only a minor issue for them to deal with. Knowing how far we've come since 1992, I have faith that we'll make great strides in the next two decades.

Back to reality - week 5

We had an amazing time in Hawaii. The wedding was beautiful and lots of fun. We got back on Sunday night and I had my 4th infusion today.

Last week I was scheduled for a treatment on Monday (one day earlier than usual) but my Oncologist decided that because my white blood cell count was too low and because I was getting such great results so far, with me going to Hawaii the next day, she didn't want to risk me getting sick. The upside; I had a tremendous amount of energy in Hawaii. The downside; a double-dose of Herceptin today.

My hair started falling out on Thursday while we were in Hawaii; it was between weeks 4 and 5. Wherever I go, I leave behind my hair. It's upsetting to see but just like JM says, I have to remember that this is temporary and truly a small price to pay as a side effect to chemo working so well.

The port feels a thousand times better now and I'm glad I got it. A month ago I regretted the decision a million times over, but I now understand why it's so much better to have it. The topical lidocaine I put on about an hour before the access is put it helps a lot, and I barely even notice its there on a day-to-day basis.

I'm contemplating whether to go to a breast cancer support group. Do I need it? Do I want it? Do I really want to be surrounded by other women who are going through this and hear about their problems? I don't know. What will I say? What do I have to share with these women?

I thought chemo would be a lot more social than it is. It's actually very solitary. Maybe it's because I haven't been going at the same time every week; this will change starting next week. :) In the movies, you always see patients getting chemo in big comfy chairs sitting next to each other and chatting. At Stanford, most patients draw their privacy curtain and keep to themselves. I both like and dislike this. A part of me wants to make a cancer friend or two who understands what I'm going through. JM has been amazing, but no matter how amazing you are I don't think one can totally comprehend the confusion and frustration of being a cancer patient without actually being or having been one. I also feel awful when I complain to JM about how much this sucks because I know how hard it is for him to be a bystander. He says he wishes it was him and I know how much of an emotional toll this disease is taking out of him.

Hmmmmm, ok. So maybe I just answered my own question about the support group myself. Maybe I'll check it out next week.

The Oncologist said today that she may give me the option of having surgery after this first cycle so I have a break from chemo then finish off the chemo after surgery. It looks like I may be headed towards a complete response (meaning no viable disease) by the midway point of chemo! I see the appeal in breaking the chemo with surgery but also feel like I want to get the chemo over and done with and then deal with the surgery afterward.

Right now the timeline for my recovery looks like this: 7 more weeks of Taxol and Herceptin then another 12 week cycle of FEC and Herceptin. After a few weeks of rest and recovery I'll have a double mastectomy and possible reconstruction right after the mastectomy (there is a good chance I'm not a candidate for this since I have to get radiation. In which case I'll have a delayed reconstruction which comes with some extra steps). Radiation will probably be everyday for
about 6.5 weeks. I'll continue on Herceptin for a total of one year and then move to an oral estrogen blocker called Tamoxifen for 5 years.

How quickly life changes...I never in a million years thought I would be making decisions like this 3 months ago. 3 months ago my biggest problem was not having enough time to go to the gym before Hawaii.

Weddings are always emotional events. When the wedding is someone close to you, it's usually even more emotional. My brother-in-law, JR got married last Friday to Cecile. Everything was beautiful; the bride, the groom, flowers, the venue, everything. Their wedding took me back to our wedding almost 7 years ago. The day I got married I was ecstatic and happy and had no idea that we would have to fight one of our most important battles only 7 years later.

During my father-in-law's toast to the bride and groom he talked about marriage and life having ups and downs and the importance of being there for one another through EVERYTHING. His words hit me hard because I realized that this is the hardest thing JM and I have ever gone through together. I remember the moment the doctor told me I have cancer, the moment I told JM, the moments we told the kids and our families. I remember the moment I stopped being angry and accepted my inevitable fight and the moment I wasn't scared anymore because I knew I was lucky and would survive this disease.

I knew on September 10, 2005 that I made the best decision by choosing to marry JM but on May 3, 2012 when I was diagnosed with cancer, I knew with absolute certainty with my
whole body that I chose the best person to be my partner. I cannot imagine going through this without JM; his kisses, hugs and his constant ability to make me laugh through this entire process has made coping so much easier.

I still have a long road ahead of me, but I will get through it stronger and better than I started...just with less hair. :)

Here's a photo of our family at the wedding:

Kicking cancer's ass

I'm here at the Stanford Infusion Center getting my third chemo treatment. I just saw my Oncology team and some more good news to report: tumor shrank yet again and is now approximately 1cm. Go chemo! Kick that cancer's ass!! The Nurse said this is one of the best results to chemotherapy she's seen in a long time; yay me!

Chemo days are always long. I'm usually at the hospital for about 5-6 hours. First, I go to the Oncology lab and get my port access put in, and my blood drawn. The blood is sent in for a full panel to make sure I'm healthy enough for chemo. I then see my Oncologist and Nurse. They ask me how I'm doing, check my tumor and my lymph nodes to see how they've reacted to chemo, go over my blood test results and answer any questions I have. Once I get sign off from my Oncologist, I'm off to the Infusion center across the street where I sit in a lazy boy recliner for 3-4 hours and get a whole recipe of drugs through my port. Today, we have a Harpist joining us in the Infusion Center; although only for a mere 10 minutes we all got to close our eyes and feel like we were at the symphony instead of getting chemo.

Usually on the second day after chemo, I actually feel the drugs attacking the tumor site. I feel little needle pricks right where the tumor is; the drugs working hard doing their job. It is an amazing feeling.

It is surreal that I have cancer. I still ask why and how, even though I now know I have the BRCA gene mutation I still ask why. I don't believe this is happening until I catch a glimpse of myself in the mirror and remember what I look like. It's hard to stay strong and smile through this crap but having so much support from all our family and friends helps so much.

Next week is JM's brother's wedding in Hawaii. I got the OK to go and also got cleared to get chemo a day early so we can be in Hawaii starting Tuesday. :) I considered not going, but why would I stay at home and feel sorry for myself? Why let cancer win and change my plans? F-you, cancer. I'm going to Hawaii and having fun and playing on the beach with my kids and maybe even having a glass of champagne to toast JR and Cecile. F-you, cancer! F-you!

Done with #2

It's 4am the day after my second treatment. As part of my pre-med recipe I get Decadron, a steroid with insomnia side effects. I'm not sure if that's what's keeping me awake or if it's the excitement of finally not living out of my suitcase.

We got some amazing news at the doctor yesterday. My tumor shrank!! My once 2.7cm tumor is now closer to 1.5cm!! One week of chemo and boom!! AND, the lymph nodes are barely palpable. Chemo is unbelievable. I still have to finish my full 24-week course (JM and I both jokingly asked if this meant we can be done next week :)) but there is something very satisfying about knowing the toxins they're pumping into my body are working the way they should be working.

I don't think I ever fully disclosed my diagnosis so here it is: I am a BRCA 2 carrier, with grade 3, HER2+, ER+ (20%), PR+ (1%) breast cancer in the right breast. Stage IIB. Tumor was sized at 2.7cm with additional malignant calcification about 5cm away in addition to a few malignant lymph nodes with the largest one measuring about 2.2 cm. So what does this all mean? Well, I'm not an Oncologist but this is my basic understanding. Obviously I don't expect anyone to rely on my laymen's understanding of my cancer diagnosis so please talk to your medical professional if you any questions.

HER2-positive breast cancer is a breast cancer that tests positive for a protein called human epidermal growth factor receptor 2, which promotes the growth of cancer cells. A HER2-positive breast cancer essentially means my HER2 receptor is telling my cells to create more HER2 genes causing an over expression of the HER2 protein; making the breast cells grow and divide in an uncontrolled way. HER2 positive cancers tend to be more aggressive and grow faster. ER+ means that my cancer is estrogen receptor positive making them sensitive to estrogen levels. PR+ means it is progesterone receptor positive making them sensitive to progesterone. Grade 3 means I have a high-grade cancer with cells quickly growing in an irregular and disorganized fashion creating new cancer cells.

So the good news (which I already announced earlier in the post): they have an amazingly effective drug that targets HER2+ breast cancer called Herceptin. Grade 3 cancer, although the worst you can have actually responds well to chemo treatment, because the cells are dividing rapidly, which is what the chemo drugs target and kill...same reason why I'll lose my hair in the next week or so.

Alright, I guess I should try to sleep. It's amazing how life changes so quickly. A month and a half ago, I would have been awake by now getting ready to be at work by 6:00.

Control

I wanted to shave my hair, so last night we came back to my sister's house.   I wanted my girls to be there, to see their dad shaving their mom's hair, and I wanted my sister to be there too. I also asked Mark (my sister's husband) to document the event; he's an awesome photographer and why not get some amazing photos of this ceremonious event.

I find it liberating to have so little hair and sort of like it. As bad as this sounds, I feel like I can get away with more. (now I just have to figure out what I want to get away with;)) I actually think I like my shaved hair better than my pixie. I feel like I have nothing left to hide behind and the vulnerability is refreshing...as is the breeze on my head. I imagine actually losing what little hair I have left will be traumatic, but we'll cross that bridge when we get there.

Thanks to chemo, I am yet another lucky cancer patient who gets to lose hair. The nurses tell me that it happens 2-3 weeks after I start chemo. It will be 1 week tomorrow. I wanted control over how I lose my hair and wanted to lose as much of it on my own terms and didn't want to wait to see clumps of hair falling out in the shower or on my pillow. I want to keep as much control over my body and my life as I can before the fight in my body between cancer and chemo drugs begin to take its toll.  Cancer takes over your life so for a control-freak like me, losing any control makes me crazy.

It was clear that Anabelle and Sofia (and Koby, their cousin) did not like their mom's new hair-do at first. Anabelle asked Sofia if she was scared and told me that she wasn't the biggest fan of my shaved hair. But as resilient as the kids have been with our move, they adjusted quickly to my new look. At lunch today, Anabelle told me, "Mom, I think you look pretty with your new hair," as she and Sofia rubbed my head with delight and laughter.

- - - - - - - -

the last moments of my pixie:

yumi prepping my hair

Sofia and me with our unicorn horns:

...and here we go...

i'm having fun

...ewwwww

this is just funny

maybe i should have stopped here...with a bird's nest on my head

...and (drum roll, please) we're done. 

my rock, the love of my life and my partner in crime. 

Blessed

I am exhausted today. We are in Pacific Grove visiting more family and the kids are having so much fun. Around 9:30 I laid down to rest with Sofia. JM kissed us good night. Anabelle hopped into the bed and said, "mom, you're not feeling good right now so I'll stay with you and read you a story, ok?" Anabelle stayed for 20 minutes and read me two stories as I cuddled with Sofia who was falling asleep to her sister's stories. I am blessed.

It just got very real

Tuesday, May 29:  ”Good morning, its 5:30 am on Tuesday.  Today is partly cloudy” sang the voice along to the soothing melody from the UNIQLO iPhone alarm clock app.  

“Partly cloudy,” ugh.  Was this an omen of what was to come on the first day of chemo?

We got ready, and headed to Stanford Hospital where I was scheduled for an echocardiogram at 7AM.  The day before, JM had walked the path from the parking lot to the echo lab.  Four-and-a-half minutes.  He wanted me to get as much sleep as I could and wanted to know exactly how much time he had before he had to wake me.  The hospital was bustling already and we navigated our way through the maze of long hallways and escalators to the in-patient echo lab.  Each turn into a new corridor added another level of anxiety.  The doctors needed a baseline status of my healthy heart for reference to look back on.  Chemo can negatively effect heart function so here we go.  I feel healthy now.  If someone told me I had cancer, I would not believe them.  Pictures from some machines and some biopsies said so though.  I’m in great shape.  Up until four weeks ago, I was training four times a week and getting bikini ready for my brother-in-laws wedding in Hawaii.  I was feeling great.  After two kids , I started feeling like I FINALLY was getting my pre-baby body back.  Now I am in a hospital gown, getting an ultrasound of my heart for chemo.  Another bitch slap courtesy of breast cancer.   

After the Echo, we walked to the lab to get my blood drawn from my new medi-port. I was scared out of my mind. Four days ago, I had this thing implanted.   I had been walking around like a robot because I was so sore.  I couldn’t turn my neck or even put on a shirt without help.  I couldn’t even ride in the car without feeling like I was going to vomit.  Now the nurse was going to stab me in the chest with a needle to access it? No f-ing way. I had to ask her to get JM because I was so scared; I honestly can’t remember the last time I was that scared.  The nurse was very nice and she was trying to be as gentle as possible but It hurt like hell.  ”F*ck, that was awful.  I’ll get used to it and hopefully it will be better next week, and better the week after that, and better the week after that…”

After our meeting with the Oncologist and her nurse we were off to the “Infusion Center” across the street.  It was the same building where I got the medi-port implanted.  If somebody blindfolded you, dropped you off in the lobby and then took the blindfold off, you would open your eyes and think you were in a Nordstroms.  There’s an automatic piano playing music, the building is brand new and, I know it’s dumb, but it’s sort of comforting to be getting treatment in a place that has such a polished presentation.  If they care about ambiance this much, they must care about the science and medicine even more, right?.  As I walked into the Infusion center I saw one other young person, but most were older. Many of them had masks on and looked frail and sick. It freaked me out…am I going to look like this in 3 months or 4 weeks too? It was all too real now. Here I go…no turning back now, right? 

Chemo went as well as it could have gone. I was actually asleep during most of the infusion. Part of the pre-meds they gave me included Benadryl, which completely knocked me out. The only thing I remember is being woken up to confirm my name and birthday by the nurse wearing a plastic robe carrying the Paclitaxel in a bag with a yellow and black hazard sign. 

Wednesday, May 30:  I felt tired, but fine after the chemo treatment but woke up the next morning feeling extremely nauseous and couldn’t get out of bed until close to 1pm.

My chemo recipe is as follows: Paclitaxel (Taxol) and Herceptin once a week for 12 weeks then FEC + Herceptin (Flurouracil, Epirubicin and Cyclophosphamide) every 3 week for another 12 weeks. My Oncologist tells me the first 12 weeks will be easier than my last 12 weeks; I’ll let you know if I agree with her. :) 

JM’s parents brought the girls to the hotel today so we got to spend the afternoon with them. Anabelle got to swim with JM and I got to lounge pool-side with Sofia. When we were back in the room, Anabelle and I were in the bathroom and she asked me, “Mom, are you going to be ok?” I replied, “Yup. I sure am, so I don’t want you to worry, ok?” To which she responded, “OK, if you say so mom.” It is heartbreaking to hear my 4-year old worrying about me. I’d like to think that I am shielding her enough from this that she doesn’t have to worry about me, but I guess that’s impossible. 

Yesterday we also got news that I am in fact a carrier of the BRCA2 gene mutation that caused this breast cancer. My chances of having this gene mutation was less than 10% according to the geneticist. My chances of getting breast cancer as a young 32 year old Asian woman was probably less than 10% also…so maybe I need to go out and buy a lotto ticket? Anyway, what does it mean to have this gene mutation? A few things: 1. I have an increased chance of developing breast cancer in my left breast so I’ll probably get a double mastectomy vs. a single 2. I have an increased chance of developing Ovarian cancer…so, I may have to get my ovaries removed at some point before I’m 40 to prevent Ovarian cancer. 3. probably the worst part: I may have passed it onto my girls. it does not put them at higher risk for any childhood cancers, but they do need to be screened for breast cancer starting in their early 20’s. My hope is that by then, there will be so many more advancements in medicine that this won’t be a big deal… 4. My parents need to get tested to see if they passed it onto me or if I somehow miraculously created this gene mutation all on my own (yay, me), and 5. if my parents are carriers, my sister and my brother will have to get tested. 

Yes, it’s true.  Chemo sucks and it will only get worse.  It gets better only after it’s over.  Which will be in six months for me, just in time for Christmas.  Not a bad present.  But, hey, we get to actually sleep with our girls starting tomorrow which I am sooo excited about!! Woo-hoo!!! 

I'm a total wimp

Yes, I admit it. I am a wimp. I hate pain. And right now all I am experiencing is pain. Yesterday (May 25th) I got my medi-port (porta-cath) implanted…and let me tell you, the thought of having this sh*t in me for the next year makes me want to quit now. The crappier part of this is that this is suppose to be the easy part. The part that’s no big deal. Great…if this is the easy part, I’m totally screwed.

I’ve had this thing for a whole 24 hours and I’m ready to part with it.

The highlight of today was seeing my girls. I miss them like crazy. I hadn’t seen them since Thursday night. I feel like a crappy mom; not being able to handle this and be a mom at the same time. I wish I were one of those Super Moms, but I guess I wasn’t born with those powers. Hopefully, I’ll feel up to seeing them again tomorrow.

I miss our mundane routine of going to work, taking our girls to day care, coming home, making dinner, making lunch for the next day, bathing, reading stories, putting the girls to sleep and having our occasional disagreements. I don’t think I’ll ever complain about having a boring life after this. I’ll take boring any day over this cancer crap. 

Good bye Seattle & Good bye hair

Between May 14th and May 18th we got three opinions on treatment: Swedish, Seattle Cancer Care Alliance (SCCA) and Stanford Hospital. We knew we didn’t have the luxury to sit and wait to make a decision on treatment, so we gave ourselves the weekend to decide on treatment.

The weekend was excruciating. In the back on my mind, I knew in my gut from the moment we left SCCA that Stanford was the best choice for me strictly from a treatment standpoint. But I had my parents, Hiro and Hilary (my brother and his fiance), friends, our house that we loved…and the girls had their friends too. Not to mention the massive amount of coordination and effort it would require to move our entire life to SF in less than a week.

That Friday, my parents picked our girls up from school and brought them back to our house; we were at SCCA from 11 to 5:30 meeting with the tumor board and couldn’t leave in time to pick them up. I sat down with JM and my parents and started talking to them about all my reasons to stay in Seattle with SCCA or go to Stanford. My dad said to me, “…so it sounds like you are pretty much set on moving to SF and going to Stanford?” My response, “…I don’t think so. I haven’t decided yet.” I was so torn. I did NOT want to leave and was trying to convince myself that staying made sense when I knew it didn’t.

I felt a massive amount of guilt leaving Seattle. I have two kids and the thought of one of them being sick and then announcing that she is leaving me, their mom, was heart breaking. I didn’t want anyone to take my decision to leave Seattle personally and I didn’t want to hurt anyone’s feelings. I felt like I was abandoning my family in Seattle, especially my parents. It was obvious that this internal conflict I was having was frustrating JM, but he was good about containing his feelings and telling me to be selfish and make the decision that felt right for me; this decision was harder than I thought it would be.
Monday, May 21st: We decided to move the entire family (back) to the bay area after living in Seattle for over 5 years to get treatment at Stanford Hospital.

This was both a sad and happy decision. Sad because of what we leave behind in Seattle but happy for what we gain: my sister and her family, JM’s three sisters and their families and the girls have all their cousins. As important as it is for my girls to ‘experience’ this with me, I want them to have outlets and opportunities to have fun and forget about the fact that their mom has cancer.

I called Stanford on Monday morning and was scheduled for my Brain MRI and medi-cath implant for Friday, May 25th.

Among other things to do before our move, an important thing on my TO DO list was getting a wig made from my hair at Anton’s Hair (http://www.antonshair.com) in Bellevue, WA. I saw Kurt (he’s the son on Anton and has been making custom wigs for cancer patients for 20 years) on Tuesday morning and he gave me a guideline for getting my hair cut: divide the hair in 16 sections and section off with pony tails.

I went to my wonderful hairdresser, Lauryn at Intermezzo (http://www.intermezzosalon.com/) in Queen Anne - who as a side note is awesome. I explained my situation to her and she moved around her schedule to accomodate me so I was able to cut my hair after work with my kids and JM. I was afraid that somehow she would treat me differently when I saw her, but she didn’t. She greeted me with a big smile and a hug and offered me a glass of wine and we laughed about bad TV; this is exactly what I needed.

The first lock that Lauryn cut off, I teared up, but the instant i saw my girls’ faces I knew I couldn’t cry so i held it in and pretended to LOVE my nee hair My hair was well below my shoulder blades. Ironically, I was growing it out to donate to the Lock of Love in July after my brother-in-law’s wedding in June. But now here I was cutting it off to make a wig for myself.

Losing my hair seems like such a superficial thing; it’s just hair, right? But really, it’s a big deal. For me, I wanted to look and feel ‘normal’ for as long as possible. Getting a cute pixie cut was a good transition to losing all of my hair. Having had long hair for years, it’s hard for me to feel like a woman or feel attractive with super short hair. Somehow (stupidly) I associate my long hair with being attractive and being a woman. Now that I don’t have my long hair, it’s hard for me to feel that way. For as many times JM said I look cute and that he liked my hair and no matter how many other people say my hair looked good, I miss my long hair and wish I didn’t have to have this hair cut. It’s about perspective though and I have to remember that it IS just hair and that it WILL grow back.

This is me getting my hair cut with my girls:

Me rockin' my new pixie cut with Sofia and Lauryn:

I delivered the hair in 16 zip lock bags to Kurt at Anton’s on Wednesday (5/23) afternoon where he made a scalp molding of my head with saran-wrap and clear tape. He said my wig would be finished by Friday (5/25):

how i got here...

Sunday, April 30^th: I had just hopped in bed to join my husband.  He had made the bed just a few minutes before and the sheets had just come out of the dryer.  Aaahhh… As I laid there basking in the coziness of it all, I remembered that I hadn’t done a self-breast exam in over a month.  Its something I try to do regularly but such a simple thing is so easily lost in the routine; work, raising two kids (Anabelle 4 and Sofia 20 months) and sometimes raising my husband ;) (JM).  What the heck is this?  I found a small lump on my right breast.  I told JM. Naturally we googled and WebMD-ed all the things we thought it would be and thought with my age, family history and health it had to be a benign cyst. He said not to worry about it and reassured me that he thought it was nothing.  The next morning, I was able to get an appointment with the on call OB-GYN. She confirmed what we had thought, but as protocol called for, sent me for imaging: Mammogram and Ultrasound at the Swedish Breast Care Center.

Tuesday, May 1^st: I decided I would go to this appointment alone since I “knew” it wasn’t anything more than some benign cyst. “No need to make it a bigger deal than it is.”  I arrived at the Swedish Breast Care Center and quickly realized I was the youngest woman in the room by a good 10 years. This made me feel better. The odds were with me. I was escorted into the changing room, then to another more private waiting room, then was finally called in for my mammogram. I guess it never really registered with me when my mom would talk about how painful mammograms were. Let me just say that I never knew my boobs could be squeezed that thin! After the mammogram, the tech escorted me back to the waiting room for the ultrasound. The ultrasound was performed by a Radiologists and that’s when I first felt like this could be bigger than what we had initially thought. He said the lump looked ‘suspicious’ and so did the lymph node under my armpit, additionally there were some areas of ‘suspicious’ calcification.  He recommended I have the lump and the node biopsied so we went ahead and took care of it right then and there.  According to him, each of the three findings are normal occurrences when found by themselves.  When they are found all together its a little more precarious.  ”50/50” he says.  Results of the biopsy were expected back in about 3 business days, which took us out to Friday or Monday.  That night, we called our radiation-oncologist friend.  He said the same thing, “50/50. But I found something on my tongue recently that I was certain was cancer and it turned out to be nothing.”  He didn’t want us to work ourselves up because you never know until you know.  

Thursday, May 3rd: JM, the girls and I had a trip to San Francisco planned for months.  I was happy to be away for the weekend and try to forget about the biopsies.  Travelling with the kids and car seats is always a little bit more difficult so JM had left Sofia and me at the airport while he and Anabelle picked up the rental car.  When they came back, he loaded the car, installed the car seats and we set off to Marin to visit my sister-in-law’s family.   “The doctor called.  He said its malignant.”  The instant I said it out loud myself is when it hit me. I started crying.  ”They have a scale for how they rate the aggressiveness of the tumor.  Mine is a 9; the most aggressive.”  Tears started streaming down from behind his sunglasses.  ”Its ok.  We’re going to be OK,” he comforted me as I read the uncertainty in his body language.  This is when Anabelle sensed something was wrong.  ”Why are you so sad Mommy?”  I couldn’t explain this.  How do you explain this!?  I didn’t even understand it.  I just told her that I missed her and played it off.  She sensed something was off.  She smiled at me in her attempt to make me feel better.  It sort of worked. 

That first night was unsettling and scary. We didn’t know what it meant to have breast cancer and how our lives were going to change from it.  Did I need to worry about my kids having to grow up without their mom? 

The weeks to follow were filled with more tests and doctor’s appointments than I have ever had in my entire life! 

We gradually told our family first, and then friends in person as we saw them in San Francisco and over the phone when we had no choice. I can’t imagine going through this without our family and friends.

As we started getting test results back from the MRI, PET Scan and blood work we were encourage and empowered. The cancer had only spread to the lymph nodes under my right arm pit but had not metasticised to anywhere else.  

Diagnosis: Stage II Breast Cancer. Cure rate: great. Attitude: positive. 

My feeling from the moment I was told I have cancer was to try to keep life as ‘normal’ as possible. I felt like the instant I allowed cancer to change the way I lived on a day-to-day basis is the day I started letting it win, which I wasn’t ready to do. 

I am a survivor and this is my diary.